Boy one of three in world to suffer from rare illness

Kate Mason

A little boy who suffered a stroke on a family holiday has become only the third person in the world to be diagnosed with a rare blood and brain disease.

Medics said Zach Kilkenny was a ‘ticking time bomb’ and could suffer a stroke at any minute after making the shock diagnosis.

Zach, now aged seven, was six when he suffered his stroke last summer.

He suffers from the blood disease hereditary spherocytosis and Moyamoya – an extremely rare, progressive disorder caused by blocked arteries in the brain for which there is no cure. Since the diagnosis his community has been rallying round to raise funds for Zach’s ongoing care and the pot is already standing at more than £30,000.

The Cantley family including mum Jane, 43, and sons Alex, 14, and Jamie, 13, were out for a family meal on holiday when disaster struck.

Zach’s family was told that without surgery the incurable moyamoya disease meant he was at risk of having a stroke at any moment.

Jane said: “We were completely shocked and devastated. It took us time to understand all of the implications and the surgery Zach required to repair the blood vessels.

“We were also made aware that Zach was a ticking time bomb just waiting to have another stroke before the surgery, which was heartbreaking for us to hear.”

Since the holiday in August, the Kilkenny family’s lives have been turned upside down.

Zach has been forced to endure months of medical appointments, two life threatening brain operations and gruelling physiotherapy.

“Zach will need to undergo tests every six to 12 months for the foreseeable future to monitor the new blood flow to his brain,” said his mum.

A fundraising bid launched to help with the expensive rehabilitation and trips needed to support Zach’s care has got off to a flying start and currently stands at £30,692.

Jane said: “We simply cannot believe how generous people have been – it’s just been overwhelming.